TikTok is one of the most popular social media platforms and plays a role in shaping public perceptions. This research examined how organ donation was portrayed on the platform.
We built a dataset of the most popular English-language TikTok videos that used the hashtags #organdonor or #organdonation. We then performed content analysis on the 400 most viewed videos after limiting data set inclusion to one video per user account.
The finalized videos (N = 313) had generated nearly 80 million views and 10 million likes. Featuring both donors (56.2%) and recipients (44.1%), videos shared experiences that celebrated and lamented lost donor lives (41.8%) while also celebrating transplantation successes (31.3%). Very few videos included public solicitation (2.9%). Common video traits included detailing medical procedures (45.4%), presenting honor walks (10.9%), and displaying donors and recipients connecting or wanting to connect (16.9%). Videos mostly had a positive (74.1%) versus negative (10.2%) leaning tone.
Far from superficially glamorizing organ donation/transplantation processes and procedures, popular English-language TikTok videos depicted what we perceived as highly emotional and expository experiences. While the videos likely offered learning and cathartic opportunities for individuals and communities, they also highlight some tensions between personal anecdotes and data/research. Findings from this research can inform public outreach efforts as well as policies related to protecting anonymity and celebrating donors with honor walks. Indeed, given TikTok's increasing popularity and influence, it could be a valuable tool to meaningfully learn from, and engage with, patient and donor communities.
